Photos seem to be more my speed than posting on a blog right now.
Photos seem to be more my speed than posting on a blog right now.
I posted this on my personal social media earlier today but I realized being so focused on other issues, I have not embraced National Diabetes Awareness Month and it is time:
A year ago, someone I admired and respected personally and professionally, handed me the biggest insult of my adult life, and it was tied to the fact that I have T1D, an autoimmune disease. I gritted my teeth and a few weeks later rode 104 miles in the Tucson desert to help cure T1D. I heard from that person yesterday. I still respect and admire them but far less than I did years ago. Then last night, I saw this photo of myself. My face says it all, I could not have been prouder or more excited to speak at the NIH this summer.
And it got me thinking, if at 6 years old, my body had the superhuman strength to annihilate its own beta cells, can you even begin to imagine what I’m capable of now? Happy feisty wishes to you all for National Diabetes Awareness Month. #NDAM
This is the thank you note I sent to the many, many people who generously supported my Amelia Island JDRF Ride. What a journey. 700 Riders. 154 with T1D. 3 Million dollars raised!
WE DID IT! Saturday’s 104 mile JDRF cycling goal is in the books, but there’s a behind-the-scenes story too.
The weekend’s adventure started on the flight. I was on a plane with a bunch of fellow JDRF cyclists but was startled to hear someone saying my name and grabbing my arm, only to find one of my teammates and the only other one who’s had T1D as long as I have, with a crashing and dangerously low blood glucose level. Things got a bit frantic but we pulled together, got him quick carbs and we all worked together.
My fundraising theme this year was Type ONEder Woman and my bike was covered in the names of all my amazing donors, Wonder Woman stickers, glitter and stars. What you may not have known, was last winter I had the honor to address 700 people on behalf of JDRF in New England. I shared my experience in clinical trials to improve the treatments of T1D AND I shared my JDRF Ride story (from Burlington to Tucson). I met so many amazing people that day, but one truly stood out, a little girl named Emma and her Mom. Emma was decorated with Wonder Woman facepaint (her favorite) and we talked about our mutual Wonder Woman love (who doesn’t love Wonder Woman?). Her father is even a fellow JDRF cyclist! Throughout the training season, I donned a Wonder Woman sports bra peaking out of my ride jersey. Slowly a theme evolved, Type ONEder Woman and this little girl and her family, constantly liking my training photos, fundraising pushes and cheering me onward.
When I arrived at the hotel, I was handed a Wonder Woman gift bag filled with Wonder Woman goodies (the tiara fit perfectly) and the most adorable card, again cheering me on (Thanks Emma’s family). In a matter of hours, I managed to drop a vial of Novolog insulin in our hotel room (sorry Paige, insulin smells disgusting) and then to my complete HORROR, at dinner, my insulin pump DIED (what?!?!?)! I was so fortunate to discover I had a backup pump and supplies in my luggage, but I was reminded of two things: Bad things happen in threes (friend emergency on flight, wasted insulin, pump death) AND the incredible power of teamwork. In all of these scenarios, my teammates offered to help and share all THEIR own supplies. And that’s exactly how ride day went.
For the first time in my ride experience, the NYC team stayed together, and we worked as a team. We rode the same speed to keep ourselves all together. We laughed at the same ride hilarity. We helped one another out. We were truly a team. Since the route had multiple distance options and looped back to the hotel, we were able to say goodbye to our friends who rode shorter routes and they were able to cheer us on as the last group made the extra 25 miles to get us to the 104 mile mark. Whew!
At the 76 mile mark, I had shooting pain in my frozen shoulder (they should call it stabbing pain shoulder, not frozen) and my right hand was constantly going numb. I had the opportunity to call it day. I looked down at my bike, and the first name I saw was Emma’s, so I hopped back on my bike (I didn’t hop, it was more like a careful climb), stuck with my team and kept pedaling. From mile 101 to 102, I had a rather cathartic moment, I was looking at Emma’s name and then the names of my nieces and nephews and then my sister Paige, who was right there, pedalling along with me. I kept thinking about Emma, and what my life was like growing up with T1D. It sounds dramatic (who me?) but it was like watching a montage of my life, like a scene in a movie. My childhood was directed by the advice given to my parents at my diagnosis, I was a child FIRST and a diabetic second. I did everything, played every sport, never missed out, but I remember quite vividly when I was the only girl in my class not invited to a birthday party because the birthday girl’s mother told her I was going to die (nope, still standing), or being on a date with a guy who freaked out that I had an insulin pump because I was “sick” and had “fooled him” into thinking I was healthy (ah the old bait and switch of perfection, oy), or the hours I have spent arguing with health insurance companies about the tools I need to take care of myself. And the rest of that mile I focused on the fact that I was on a historic bike ride for JDRF, my T1D buddies, and myself as this ride raised an epic 3 million dollars to ensure a better future for everyone with T1D.
At mile 103, we lined up as a team, and waited to cross the finish line ALL TOGETHER. In that moment of waiting, I saw my friend’s name, the one with the emergency on the plane. He’s got two adorable kids (who were at the ride), a fantastic wife (who rode) and he’s an accomplished cyclist (unlike my scattered cycling skills) and we are in the 37 years with T1D club, together. As I then told my ride mates, we are so lucky because so many people will never know what it feels like to accomplish a goal in an endurance sport and even luckier, because so many of the people with T1D prior to us, never got to see this point in life. I am grateful but I’m on a mission to change the future of this disease.
And then I got to do something I have dreamed of for the past 2 years, I crossed the finish line, side-by-side, with my biggest fan, my sister Paige.
Needless to say, no beer has ever tasted as good as the ones waiting for us when got off our bikes!
I thank you with all my heart and busted pancreas for supporting me and inspiring my dream.
Now, let’s celebrate! xo Alecia (AKA Type ONEder Woman… yes, the tiara has gone to my head)
The countdown is on!
I have been a participant in the US Senseonics 90 day implantable continuous glucose monitor clinical trial since March. 7 days left. Here’s the info and latest announcement via DiaTribe .
I’m also back on the bike – ish. My self led training rides have been more like meandering training tours (oh look! Grafitti…) and in the 20-25 mile range only, but I’ve got time (denial). The Coney Island Art Walls are almost done!
Last weekend I sprayed myself with SPF 30 but as I’ve been having trouble keeping the Senseonics sticker and transmitter in place (especially when I exercise), I was cautious to dab sunblock near my robot arm but not spray or slather. That was unfortunate. This interesting tan-fail has happened twice now. The result looked like this post-shower. So sexy, no YOU stop it!
And this 4 days later:
7 days left! After they remove the implant I will have stitches. Since I suspect I will have this cool and awesome tan line for a while longer, I have been thinking about how I will rock my new look. This is the design I have chosen:
Like those wheatpaste girls from Gold Loxe say “Just Right”
I’m currently out of the blogging and twitter loop but 2 quick items:
Sanofi, JDRF, Glucose Responsive Insulin. Yes, please and let’s keep things moving forward!
I should have posted this long before now but JDRF New England is holding their TypeOneNation Summit tomorrow in Boston. You can find the registration info here and the programming info here. They are expecting 675 people. How exciting! I will also be speaking along with some incredibly amazing people. (675. so. many).
As I’ve written before, JDRF Type One Nation Summits are an incredible opportunity to learn more about advances in T1D, connect, and meet some remarkable people. There is programming for everyone… kids, tweens/teens, adults with T1D, parents of T1Ds, and spouses/significant others.
My presentation is: Closing the Loop with Sneakers and Spokes: My T1D and JDRF Story.
This is one of my slides.
If nothing else, I bring the pizzazz (and enthusiasm).
See ya soon Boston!
Recently I was contacted by a reporter from my local FOX affiliate about a story she wanted to cover on the Artificial Pancreas for a segment called The BIG Idea.
Tonight, the piece aired on our local 10pm FOX 5 NY news. My endocrinologist and the Chief Mission Office for JDRF were also interviewed. It’s amazing to witness how so much footage is made into such a short but thorough news segment. I was happily surprised by the accuracy of the story and pleased with how they explained the technology involved. I owe a huge thanks to Kerry Drew and especially the editing team who made this come to fruition. I have also decided I look exceptionally tired and should start going to sleep earlier. Seriously though, I’m honored to have had a voice in spreading this story. This AP technology is getting closer! The UVA algorithm I tested in my first AP trial is now slated for 3 month AT-HOME trials which has happened in the time since they filmed this news segment. Keep pushing forward (and get some sleep).
Here’s the video: FOX 5 The BIG Idea.
Today was full of surprises, many, but the one that sticks out the most is a moment right outside my office. I saw it upside down as I walked down the street and it took my breath away. It was not this shape a few hours later (just a wet blob). I stopped a man who was about to walk across it and showed him how the snow melting on top of the scaffolding had dripped into the shape of a heart. He smiled and told me how the cord for his computer sometimes makes the shape of a heart. I told him how I tend to see a lot of hearts and I its a great thing. Powerful heart moments… or possibly stranger danger (me, not the guy). xo
*PLEASE NOTE: THE GIVE-A-WAY PORTION OF THE POST BELOW ENDED ON 1/6/16… the frozen shoulder is starting to get better, or shall I say “thaw”? Thanks!
I keep starting and stopping a post I’ve been writing about how I was diagnosed with Frozen shoulder a few months ago. It’s another bizarre complication of T1D and I did not have an easy time getting it diagnosed (2 doctors thought it was a partial tear of the rotator cuff although I suspected frozen shoulder but they thought I had too much mobility for it to be frozen), 3 failed MRI’s (it was impossible to keep my arm still at that weird angle for so long), and the absurd amount of time I had to wait to get into physical therapy (insurance, referrals, etc). 2 things seem to have accelerated the “freeze” this past Fall… I started boxing again and the trainer kept having me do push-ups on a strange angle and the fact that I ride my bike in Manhattan and have to keep reminding myself to loosen up and hold my shoulders down (I suspect I ride looking like I’m holding on for dear life… because I AM).
Due to this insurance mess, this morning was my last session at physical therapy. I still have more sessions to go (pre approved) but can’t use them since my plan is being discontinued (12/31) and will have to start this process all over again next month with new insurance. GRRRRR.
This week I received a return check from a deposit I had to put on my home many, many years ago. I was quite surprised and decided 1/2 would go to something special.
When I left physical therapy this morning, there were police barricades every which way and I was redirected to walk across Rockefeller Center. Big tree, tourists a’plenty, and my path blocked. There were hundreds of officers standing in line on 5th Avenue. Today was the funeral of NYPD Detective and Air National Guard technical sergeant Joseph Lemm, who was killed by a suicide bomber last week in Afghanistan. It was another reminder of just how short this life is, as he leaves behind a wife and 2 children. When I finished navigating barricades, I was standing in front of the American Girl flagship store which opens at 9am (surprise).
Yesterday my social media newsfeeds and emails were inundated with postings about how The American Girl Company had released a diabetes care kit for American Girl dolls. So, for the first time in my life, I walked into an American Girl store (holy smokes, kid culture shock), and asked for the diabetes doll stuff. Yep, they had it on display. It includes:
Diabetes storage case, ID card, medical bracelet, glucose monitor and lancet device, glucose tab container, an insulin pump, an insulin pen, some stickers, adhesive disk, and a log book.
I did not cry in the store since I was still shocked I was there and have also never understood American Girl dolls. These dolls weren’t around in my time (I was all about Barbie) but my sister had them. I always thought they were focused on historical periods which confused the heck out of me because why would Kit from 1934 be hanging out with Samantha from 1904 and why would either of them have inline skates? Made zero sense to me.
This morning, I learned that there are a TON of these dolls and the American History dolls are just one part. Kids, well parents, get the dolls to look like the kid. They have a whole resturant in the store where people go to have tea with their doll. Kids have birthday parties and all bring their American girl dolls along… and NOW that kid with T1D, can have accessories (a whole kit) that gives their doll the very same devices they use to manage and thrive with T1D. Yep, no tears until right this very second. I never grew up with an insulin pump and blood glucose meters came later in my diabetes days (I = Barbie playing dinosaur) but I did play a heck of a lot of sports. American Girl dolls have a zillion sport accessory options (A ZILLION) and NOW they have diabetes equipment options too. Amazing. Truly Me!
I took home deposit money and bought some American Girl Diabetes Care Kits and then I did what any grown woman would do after being a kid in a toy store… I called my Mom. Although she was flabbergasted that this diabetes equipment exists for dolls, she was more surprised that for all these years, I’d thought American Girl dolls should have been called Time Traveler dolls.
I now have 6 American Girl Diabetes Kits to GIVE away and my Mom suggested I give them away right here. So in the comments, please tell me why you would like the Care kit and my Mom will pick out the winners (and I’ll notify you via the comments section by 1/6/16 and I will pick-up the shipping. Shipping outside of the US will take a bit longer though).
I ask one thing in return though, that you pay it forward.
On the other side of Pain is Wisdom. xo
And for more information on how this American Girls diabetes care kit happened check out this story from the LA Times.
The great health insurance debacle continues.
I received a letter 2 days ago dated 12/16 (last day of open enrollment for coverage starting 1/1), that my health insurance application was rejected due to the form being “old”. Yep. I had questioned the insurance broker in reference to the date on the application and if there was a newer one (there was a discrepancy in one of the plan codes although not mine). It’s a long story involving many emails and phone calls but I was assured by the broker that the MY plan name and number were the same so the application would still be processed. Nope. After cry-panicking, sending an angry email on Saturday night, followed by more crying, I had to pull myself together for a FaceTime call with one of my nephews.
My nephew started by asking me, “What’s happening?” so I scaled it back but explained that I was in a bit of a mess with health insurance and how crazy things were. He repeated back to me “crazy”. Indeed, crazy. I spoke of how the options I had were not even close to what I wanted and all were worse than my current coverage but now another wrench was thrown into the mix. He said something I didn’t quite understand, mentioned Lightning McQueen and talked about things that are “great”. I told him the situation is tricky and he kept saying “tricky” back to me. He then said my name, followed by “Rocky run”, put his hands above his head and started running in circles. Next he dropped to the floor and did his version of Rocky Balboa push-ups (looked more like an impression of a seal). Did I mention my nephew is 2 years old? And it made me laugh and then think. I have the privilege from time to time to speak to people about the evolution of T1D care and technologies, about progress and research, and the most important part… advocacy, I have spoken about the JDRF Ride program and why it is so very dear to me. I get to talk and talk and even tie things into some of my own personal philosophies and parallels with Rocky Balboa. Eye of the Tiger, baby.
My nephew’s advice was solid. This insurance mess is a mess for sure, but I need to keep fighting. This was another round, not the full fight. It’s like athletic training. You keep going and when you hit obstacles, you use your mind and experience to figure out multiple solutions.
I moved on to Plan B yesterday when I’d exhausted everything I could do in this debacle (it was Sunday), I took advantage of this Miami-esque weather we’re having in the North East, put air in the Pinata bike tires, dressed in a costume of Spandex and started pedaling. I worked on Plan E (I already had a rough outline of C and D before I reached the West Side. There were so many tourists near the WTC memorial and most walking in the bike lane. “ON YOUR RIGHT,” was unsuccessful with most people who were not speaking English and I may have sounded like the teacher from Peanuts, “Wha-waaa-whhhha-WAAAAHH” so I decided to take side streets back across the city. What a gift. I saw beautiful graffiti from some of my favorite street artists, cleared my head a bit, smiled.
This morning I started my follow-up calls to my health insurance broker after a night of emails and networking my D plan. My “kill them with kindness rule” had to be shelved for a bit. Emails unanswered, voicemail messages unreturned, cell phone calls and texts done (repeatedly). Couldn’t get my hands on a carrier pigeon (damn those birds are fast). I called the broker company’s main number and then kept dialing extensions of everyone else in that department. Oops. I’m sorry I dialed the wrong extension, I haven’t been able to get through, can you transfer me, I don’t mind waiting, thanks so much for your help. I finished signing all the appropriate forms a few minutes later. Will this situation resolve itself in enough time? I don’t know. Plan C is so close now I could lick it.
Patient advocacy starts with us. Always. Now stick your hands in the air and Rocky Run.
Last 1.5 miles, Oh my God! Immediate illegal turn… yet again (rebel) and then full sprint across street in clickety-clack shoes. Photo. Stood smiling. Phone battery almost dead.
A week full of some wacky and wild surprises, THIS was the Sunday evening finale. Cherry on top….. errrrr, actually heart on top.
Someone I admire so very much immediately messaged me last night when I posted the photo,
“That bike ALWAYS has that much heart on it”.
Yep. Tears a plenty.
Here’s the next step (well spin): NO QUITTING
Like most people with diabetes, I often find myself disgusted, upset and shaking my head over diabetes publicity, often. The Crossfit CEO debacle sadness me on so many levels. When people don’t seem to think the Medicare CGM coverage (lack there of) doesn’t involve them, I can’t fathom how they don’t think it affects ALL of us. Believe me, it does. I have about 10 other things I could add to this list off the top of my head, but I won’t.
I was in an Artificial Pancreas Clinical trial. No news there. I was asked to share my experience with EverydayHealth.com along with the doctor who oversaw the trial (who is my endocrinologist). I’ve written about this before. Yesterday, the story I filmed with Everyday Health posted (is that the word? “posted”?). Sure my first name is completely botched. Mangled. It is far more exotic than my name actually sounds so I’m embracing it. The pensive look to the Hudson river makes me giggle. Very deep in thought. But the thing is, it is stories like this, stories that help explain diabetes and where things are going that give ME hope. I am glad to see the incredible minds from UVA and Mount Sinai getting credit. I love that this is positive. I love that this EXPLAINS and educates. I love that I can send this to people who have donated to JDRF and explain that a JDRF grant made this clinical trial possible. I love that TypeZero technologies exists. I love that there is a video on the internet where I pretty much admit to wanting to be a klepto.
Here you go:
So take THAT, negativity.
Thank you to all the people who devote their time and energy to getting this technology closer to reality.
What a week! Hello Blue Moon!
Buenos dias, mi amigos!